What can shared decision-making look like from the patient’s perspective? A treatment that is the best medical option may not be the best for the person’s life. In this guest blog, Rosalind talks about the treatment choices she faced when her Graves Disease symptoms returned and how she worked out what is best for her.

We were about to launch a new family business in the week I also became a patient

How embarrassing. I arrived home from my GP appointment and fell into my husband’s arms, sobbing with relief that I wasn’t going to die, and looked up to see our cheery hairdresser, mid cut on my son’s hair, mouth open, scissors aloft and forgetting all about chirruping about her holiday. I can laugh now as I look back on the forty-something me; wife, mother, daughter, primary school teacher, singing group conductor, about to embark on two new paths whilst keeping all of these plates spinning. We were about to launch a new family business in the week that I also became a patient, diagnosed with Graves Disease.

Now I had an explanation for the uncontrollable trembling of my hands that had made my parents fear I might have Parkinson’s Disease; for my rapid speech which was apparently like a music track on fast forward; for my heart keeping me awake at night with its pounding and irregular rate and levels of anxiety that soared as I felt my body spinning out of control.

My GP was calm and reassuring. She was sure I had Graves Disease, an overactive thyroid. I needed time and medication to bring the symptoms under control. I was going to be all right. And four years later, I am all right. But the road to recovery and moving on is neither straight nor easy.

My symptoms came back

Life returned to normal thanks to treatment with propranolol (a beta blocker, to regulate my heart rate) and carbimazole, an anti-thyroid drug (ATD). I came off the drugs after 18 months and felt confident I would be one of the lucky ones (about 50% of people with Graves Disease) whose symptoms disappeared for ever. Six months later, my symptoms were back.

Now I had to be put under the care of an endocrine specialist, who told me that I wouldn’t be able to take ATDs for ever. The likelihood is that my symptoms won’t resolve permanently without treatment to destroy all or part of my thyroid gland. This can be done by surgery or treatment with radioiodine (RI).

Faced with a choice of treatments, here’s what I wanted to know

What do the treatments entail?

What are the likely benefits?

What will the recovery time be?

Are there any possible harms?

What is the likely outcome?

As I started to investigate, it soon became clear that I also needed to ask another question that only I could answer:

what are my priorities?

Making good treatment choices needs best evidence, clinical expertise and patient values

I didn’t know the phrase at the time, but these things are essential for ‘shared decision making’, conversation between clinicians and patients to establish what might be the best medical treatment and what might fit best for that person, what feels right for them and works in the context of their life.

I was particularly bothered about the potential for tiredness and weight gain. I worried about the need to take thyroxine for life as a result of treatment; do we know whether that’s safe long-term? Then there were worries about the impact of each treatment on my everyday life. There was so much I needed to know before I felt I could make a good decision.

Looking for answers

As I know Sarah (who edits Evidently Cochrane), I asked her what evidence is available to help answer my questions. Together, we looked at the Cochrane Library for reviews on Graves Disease treatment. Here’s what we found:

A Cochrane review on ATDs for Graves Disease found some (not very good) evidence that the best length of treatment is 12 to 18 months and that one type of drug regime seems to have fewer side effects than another

So there are two reviews coming that could really help someone making this choice. If they find that there isn’t reliable evidence about the treatments, that’s important to know too. They weren’t ready in time for me, but the review on radioiodine had useful background information from other research and this, along with information we found from another systematic review and from the American Thyroid Association Guidelines, helped me work out what I wanted to ask my doctor.

Helpful conversations with doctors

Over the following weeks, I had separate consultations with senior doctors about RI treatment, surgery and continuing drug therapy. I felt that all three meetings were very positive and the doctors, though surprised that I came to them armed with information and questions, were very open to discussion, rather than dictating what was going to happen to me.

Radioiodine (RI) treatment: is it right for me?

I’d learned from what I’d read that RI is considered to be safe, easy to administer, effective and cheap. ‘Success’ is the destruction of the thyroid gland (usually 2-3 months after having RI) followed by a daily dose of thyroxine.

My son, who’d been learning about radioactive isotopes at school, was very anxious about the increased risk of cancer and this had a marked effect on me in the days leading up to the consultation. The consultant explained that there is a slightly higher risk of gastric cancer, although the data is very weak and that treatment for Graves may result in more cancers being discovered very early. So I had to balance a small risk with a high degree of anxiety that, should I ever get cancer, both my son and I would blame it on the RI treatment. The doctor said she had met other patients like me; they remained anxious long after their RI treatment about the increased risk of cancer.

“The practical implications [of the treatment] are mind-boggling… It would make my work impossible”

The picture became more complicated when I read the leaflet outlining ‘Precautions to be observed after your Iodine treatment for Thyrotoxicosis’. This included a restriction on the time spent in close proximity (less than one metre) with adults to 15 minutes a day for 11 days and with children and pregnant women for up to three weeks. The practical implications of this are mind-boggling. It would make my work impossible and I am an extremely social creature who ‘tears up’ at the thought of being unable to hug my husband or children for a day let alone couple of weeks. Where would I go? Other friends have told me they would relish the time alone and that I should write my first novel or maybe I should just take school reports to write…

The doctor pointed out that treatment failure with RI is 10% in our area. To me this is quite significant – one in every 10 people! I always think that I am going to be the one that the statistics talk about! Why put myself through the procedure when I have a one in 10 chance of having to then have a further course of RI or surgery to remove the mangled thyroid? Perhaps surgery would be a better option.

Would surgery be right for me?

For me, my voice is massively important

To choose to have surgery is not a decision to be taken lightly by anyone. For me, my voice is massively important. As a primary school teacher, a singing teacher and a conductor, I use it every day over and above ‘ordinary’ communication. Last winter I had my first ever bout of laryngitis, which confirmed this. I could not speak or sing, therefore I could not work. My major worry was the risk of damage to the recurrent laryngeal nerve, which is close to the thyroid. How real was the risk of losing my voice or of it being different after surgery? I was made even more worried about this when I discovered a colleague had been left without a voice for six months after thyroid surgery. A bad anaesthetic experience in the past had left me afraid of a repeat. Then there were practical concerns about how and when I would fit surgery and recovery into my life!

The surgeon I was sent to is very good at his job. I know because I accessed his performance data online. I had a good conversation with him in which he acknowledged how important my voice is to me and explained that he would be able to monitor the nerves during the operation, to make damaging them less likely.* When I said that the choices for treating my GD make me want to hide under a pillow and wake up with it all having gone away, he said that surgery could be my best option, as that is what the procedure enables the patient to do. As with RI treatment, I would need to take thyroxine daily for life, but he told me there are no known long-term harms associated with this.

Where have I got to now?

Having information to call upon has enabled me to enter into good discussions with my doctors about the evidence, practicalities and any questions and concerns I have.

I am now in the 16th month of my second course of ATD treatment. I have continued to put on weight. My consultant has advised me that only 10% of patients will have a thyroid that has ‘burned itself out’ following a second course but that is my current choice (and hope) for the future. She has also pointed out that being overweight can lead to an increased risk of cancer. Ouch. Painful to hear, but true.

I can honestly say that neither RI or surgery have any appeal whatsoever and if I can avoid them, I certainly will. But if Graves recurs again, for a third time, I feel that I am armed with all the evidence I need and therefore in a good position to make a decision.

Editors notes:

*Since this blog was published, Cochrane reviews on thyroid surgery for Graves’ disease, intraoperative neuromonitoring versus visual nerve identification during thyroid surgery and and RI versus ATDs have been published and can be accessed via the links in the blog.

Royal College of Surgeons of England. “Driving up standards of care for patients through publishing surgeons outcomes data”. Royal College of Surgeons of England, Patients, The Surgical Team, Surgical Outcomes. Web. 18 September 2015. https://www.rcseng.ac.uk/patients/the-surgical-team/surgical-outcomes/surgical-outcomes#Specialties.Editor’s note: Once you click on the specialty that interests you, you are taken to a page where you can select the name of your particular surgeon from a drop down menu and gain access to data on a range of outcomes in relation to all other surgeons for whom there are data, such as number of operations, number of first-time operations, postoperative length of stay, related re-admission rate, re-exploration for bleeding rate, in-hospital mortality rate, late hypocalcaemia rate, data completeness.

About Sarah Chapman

Sarah's work as a Knowledge Broker at Cochrane UK focuses on disseminating Cochrane evidence through social media, including Evidently Cochrane blogs, blogshots and the ‘Evidence for Everyday’ series for nurses, midwives, allied health professionals and patients.
A former registered general nurse, Sarah has a particular interest making evidence accessible and useful to practitioners and to others making decisions about health. Before joining Cochrane, Sarah also worked on systematic reviews for the University of Oxford and the Royal College of Nursing Institute, and obtained degrees in History from the University of Oxford and in the history of women’s health and illness in early modern England (MPhil., University of Reading).

2 Comments on this post

Nice article, I like it when specific real life situations allow discussion on a much wider topic.

So much depends on the Doctor we find ourselves in front of, they obviously have to be knowledgeable about the various treatment options, empathetic to the patient and their situation and have the ability and time to communicate technical issues in an understandable way.
I fear the current time pressures, especially on GPs, do not make this easy for them, but we as patients must ensure we are given the time to fully understand our options and consider them in depth to ensure the right choice is made.

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